MdDS: an Infographic and letter to share

MdDS_infographicDear Friends and Family,

I am living with a rare condition with an interesting name, Mal de Débarquement Syndrome (MdDS).

What is that you ask?

Mal de Débarquement Syndrome or Disembark­ment Syndrome is a neurological disorder that most often develops following an ocean cruise. Less often, a perceived sense of motion follows air, train, or auto travel. In fact, any motion experience can result in symptoms, and cases of spontaneous onset have been reported. The symptoms of MdDS include a persistent sensation of motion such as rocking, swaying, bobbling and/or tumbling, and fatigue, imbalance, and difficulty concentrating (impaired cognition). These symptoms are chronic and may persist for years.

MdDS is not life-threatening but it is life-altering. In fact, while the intensity of symptoms is highly variable among patients, they may be quite disabling. Symptoms are often reduced when in passive motion such as in a moving car, airplane, or train. If remission is achieved, the recurrence rate of MdDS is high and symptoms usually more severe. Unfortunately, MdDS is frequently misdiagnosed or undiagnosed, lacks an effective treatment, and the cause remains unknown.

For more information visit: http://www.mddsfoundation.org

The MdDS Balance Disorder Foundation is an all‐volunteer 501(c)(3) organization that seeks to promote awareness of, find a cure for, and assist patients suffering with MdDS.

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Trampoline Days, a poem by Lois.

Lois’ case involves experiencing 24/7 music in her brain. Not tinnitus, she hears regular musical notes. This is her poem.

trampoline-days
Spontaneous MdDS is just as frustrating as classic (motion triggered) MdDS. Please share (buttons below 👇. Click “leave a comment” if you don’t see them).

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⏱️ Countdown to Rare Disease Day: 35 Days

In Case You Missed It: The MdDS Awareness Store is open for business. From greeting cards to graphic tees, a wide variety of items is available.  

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NEW THIS MONTH: Rare Disease Day Collection

Purchase a “Handprints” (official logo for Rare Disease Day) or other awareness-raising shirt today and wear it proudly on February 28, 2016. If it’s cold in your part of the world on Rare Disease Day, a hoodie is perfect.

CUSTOMIZE IT! Everything in the MdDS Awareness Store store can be customized. Be sure to look for style and color options, as well as text options for imprinting your own message. If, however, you want something else, just ask. Our store volunteers continue to add items as their MdDS permits.

Here’s a sampling to get you started.

Rare Disease Day American Apparel Fine T-Shirt

Rare Disease Day, Personalize All, Round Button

Men's MdDS Awareness Nano Hanes T-Shirt

Men’s MdDS Awareness T-Shirt in adult size S-6X!

Be sure to check the top of the screen at www.zazzle.com/mddsfoundation for discount codes. Today ZAZZSENDLOVE will save you 15% sitewide. Different categories go on sale regularly so you should never have to pay full price.

Shop the Store Today: www.zazzle.com/mddsfoundation

NOTE: International shipping can take as long as 21 days, so order soon!

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Still on a boat that’s never still

chair

There are things you may not always notice, but have become part of my routine.

I don’t tell you as much anymore, but I’m still rocking.

I don’t cry every day, but I’m still kind of sad.

I’ve stopped talking about it mostly, but it’s still there. The rocking you usually don’t see (but I always feel).

It’s still with me. All day. Every day. The internal swing set is still going. Back and forth, up and down. Always moving. Never still.

My life is still being lived on a boat, and it can feel different from day to day, or even hour to hour. Sometimes there are light waves that I can mostly tune out, and sometimes there are stormy seas that can knock me off my feet.

Eventually I got tired of being “that” person. The one who complained all the time. The one who didn’t seem happy. The person who didn’t seem to be engaged or interested.

So as time went on, I got a little quieter.

My silence doesn’t mean it’s gone. It just means I’m coping and trying to live my life. But it can be really hard sometimes. There are moments of complete despair and frustration. Times when I struggle to prepare a meal, sit at a table, follow the story you’re telling me, or write a sentence that makes sense.

You may wonder why I’m walking slower, and maybe you even ask me. “Just tired,” I might say. I’ve stopped trying to explain how I’m walking on a trampoline. I know it doesn’t make sense and sounds bizarre. So instead, I’m “just tired,” and usually that’s true as well.

There are things you may not always notice, but have become part of my routine. How I request a booth at a restaurant and select places with dim lighting. How I reach for the handrails everywhere I go. How I avoid certain stores and places. How I struggle to clean, cook, run errands and exercise. And how I pass on some outings and activities I would have done before.

When the rocking gets to be too much, sometimes I need to cry. Please don’t tell me I shouldn’t. Let me cry. Let me rant. Let me have a short pity party. Crying helps me cope. It doesn’t mean I can’t deal with it – it just sometimes helps me deal with it.

When you see me holding my head, clutching the table, leaning against a wall, gazing off into the distance, or just being a little quieter, it means I’m struggling. Lend me your arm. Give me a hug. Help me if I ask. Or give me some time to myself.

So no, it hasn’t gone away. I just don’t talk about it as much anymore. There’s nothing new to say about it really.

I try to focus more on other things now, and that’s how it should be. There’s so much I love about my life and this isn’t going to stop me from living it. I’m coping, I’m accepting, and I’m moving forward. I just wanted to let you know that it’s still there.

I’m still on a boat adrift at sea, searching for a shoreline that hasn’t appeared. I’m still on a boat that’s never still.

Sheryl Soffer

 

Posted in Faces of MdDS, Uncategorized | 53 Comments